This Positive Life: Dee Dee Chamblee Bounces Back From 3 T Cells to Being a Trans Activist

By Terri Wilder

August 26, 2013

Dee Dee Chamblee

Dee Dee Chamblee was diagnosed at a time when people were dying all around her, and she damn near expected to get HIV. Living in the South in 1987, she describes what was happening around her as a kind of holocaust. However, even after the drug use, sex work and jail time, Dee Dee has risen like a phoenix and founded LaGender, a transadvocacy group in Atlanta.

After coming back from living with only 3 T cells, Dee Dee knows that it takes more than medicine to be healthy -- it takes will, perseverance and self-esteem. You have to show that you want to live, and Dee Dee knew that God had a mission for her. Where she once entered jail through its back doors, she now goes in through the front to help other transgender people just like her make it through the system and live a life full of opportunity, not tragedy.

I want to start out by talking to you about when you found out that you were HIV positive. So, if you could just describe that situation, the date, and how you found out about your diagnosis.

I was diagnosed 25 years ago, in 1987. And it was during the time when I was expecting it. There were people dying all around me. We couldn't even keep up with the people that were dead. We would have to call and make sure: Did you tell me that somebody died that day?

It was like a holocaust. It was a tragedy. We had no counseling to get through it. And so, when I became positive, I kind of denied it, went into denial for like seven years. Did drugs, alcohol, prostituted, and did the whole realm. And, really, literally was trying to kill myself, because that's the way it seemed that the world wanted me to just disappear. Nobody wanted to look at me. People were very discriminatory toward transgenders, as far as getting jobs and stuff like that. So, my only choice was to prostitute at that time.

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Once I found out, and after the seven years of denial, I realized that I hadn't went nowhere. So, I decided I better brush the dirt off of me and kick the flowers to the side -- that the funeral is not going to be held, it doesn't seem. I got up and I started trying to find me a support group, someone that could help me love myself again.

And I did find it. I found a group called Common Ground. When I first went there, I couldn't believe these people. When I first went up in the yard -- they was in the yard when I got there, at the house -- and they had this fried chicken. It was piled up so high. I had never seen fried chicken piled up that high. And I said, "I wonder what kind of people these are here."

So, I went on up there and I met them. They told me about the group. There was a group that they had every day, and they provided lunch for you. It was a spiritual group, where they had poetry and spiritual meditation and different exercises like catalyst, massage, Reiki massage, and different things like that, that we could do to improve our whole emotional and physical being.

I started going every day. And they started loving me like I was. They didn't have no judgments. These people are special that have been sent to me by God. They taught me to love myself, and I stayed there at that group for like five years. And they poured so much love in me. I said, "Oh, what am I going to do without this love, you know, poured into me? I know I'm not supposed to just receive all this, and not do anything with it." So that started my next level in my journey to find out what I was supposed to do.

"We couldn't even keep up with the people that were dead. We would have to call and make sure: Did you tell me that somebody died that day?"

And where I had came from, the things that had happened to me -- going to jail, prostituting, drugs, and all that -- all those things were big, bad issues in my life. But it turned out, those happened to be the issues that gave me triumph, too. Because even though I went through the jailhouse in the back of the jailhouse doors, then it turned around to where I was able to go through the front and do support groups in there for the transgender people. I got on the task force with the Atlanta police department, and we developed a relationship with the city chief of police. And that brought about a change.

Dee Dee, I just want to go back real quickly to when you were diagnosed. I know that you now live in Atlanta, Ga. Were you diagnosed in Atlanta?

Yes, I was diagnosed here at Grady Hospital, during the time when they didn't want to touch you, and all the horrible, horrible stories that we had to go through.

So, you were sick, and you were admitted to the hospital? And that's where they tested you?

Mm-hmm.

OK. And how old were you when that happened?

I think I was 27.

So, you felt ill, went to the hospital and they admitted you. They tested you, and that's when they told you that you had an HIV diagnosis. Do you have an AIDS diagnosis, or do you have HIV?

I have an AIDS diagnosis.

Did that happen at that hospitalization? Did they tell you that you had AIDS?

Inspiring stories of people living with HIV.

In this clip, Dee Dee speaks about her initial diagnosis with HIV, and how she saw hope when she had only 3 T cells.

These photos are of Dee Dee and friends that she has met through her trans activism.

Yeah.

Do you remember what your T-cell count was during that time that you got diagnosed?

It was like 30, because I had tuberculosis. When I healed from the tuberculosis, then my numbers came back up a little. Then I got sick again, and they fell back down to 3. I lived on those 3 T cells -- I call them the Father, the Son and the Holy Ghost -- for the next 10 years.

Bactrim [co-trimoxazole] really was the thing that kept me alive then. Because I didn't want to take the medications that were out during that time because of the side effects that people were experiencing. The way it makes you look -- you know, your skin, everything -- it was just horrible and my system couldn't take it. It was too harsh.

And, after living on those 3 T cells, it taught me that, because I had built up my self-esteem and my mental health had improved to such an extent, that that really was a key ingredient, besides the medicine, that helped me to keep going.

When you were admitted to the hospital, did you suspect that it might be HIV? Were you aware that you might be at risk?

I knew. I was doing everything everybody that was dying around me was doing. So I knew my time was coming, too. I hadn't done anything different than they had did. We were having the same men, you know, turning the same tricks.

Do you know who you got HIV from?

No, I couldn't, not possibly.

After you got your diagnosis in the hospital, do you remember who was the first person you told?

"I was doing everything everybody that was dying around me was doing. So I knew my time was coming, too. I hadn't done anything different than they had did. We were having the same men, you know, turning the same tricks."

The first person I told, I think, was my mother.

And when was that?

That was like five years after the seven-year period. After seven years of denial, five years after that I was able to tell my mother.

How did you start that conversation?

I just told her.

Was this over the phone, or was it in person?

Yes, over the phone. I just told her. And I told her about the medicine I was taking, and everything. She said, "Oh, I don't believe you got that." It was just like she just brushed it out of her mind. "You don't have that." I looked at it in a positive way, you know -- that she's believing that I don't have it.

Did she ever come to the reality that you are living with HIV?

I talk about it all the time. My sisters know about it. They have even worked at my organization, volunteered. She doesn't say too much about it, or ask any questions about it. I have to just tell her different things that are happening in my life. Then I explain things about HIV and AIDS along the way. And she don't ask me any questions. I just have to do that and then that's how she's getting her education. Because she don't want me to know that I'm actually educating her.

Think about people that you told about your HIV status that were family or friends. Did any of those relationships change, either for the better or for worse, when you told them?

With my family, it was about the same. Because they figured, I guess, to be a transgender, HIV is right along the same. We already felt like you was dead when we found out you were transgender.

Talk to me about that. That's a sad phrase that you just said. Tell me about when you came to them and said, "I'm transgender."

Yeah. See, they went through a mourning process. My two sisters went through because they mourned the loss of a brother. Because they had a brother no more. And my mother, she went through mourning because she lost a son. She has embraced me way further than I thought she could have ever been capable of doing. Because of the time she was raised in, and how she was taught, I did not think she would be able to get to the point she is today. My sisters, they didn't have too much trouble with it.

What year was this that you shared with them that you were transitioning?

I think it was '90.

OK. So, in 1990, you shared that information with them. Do you remember where you were? Was it over the phone? Was it face to face?

It was on the phone, never in face to face -- not with my mama.

Why is that?

Because she had thunderbolts come out of her eyes, and smoke would come out her ears. I was deathly afraid of her. I was afraid of my mother up until my 30s, really. Still. She had that kind of control, you know.

Can you talk to me about your experience of living with HIV as a transgender woman? Do you feel that the challenges are more difficult or different for a transgender person living with HIV than a non-trans person?

Well, it's kind of like you're dealing with a quadruple stigma. You're dealing with being black, you're dealing with being transgender, you're dealing with being poor and uneducated, and then you're dealing with this ...

Your HIV.

So you've got those four stigmas always hovering over you. Every day is a fight -- a fight to use the bathroom, a fight to get a job, a fight to get people to respect you as you present yourself, a fight just to have normal human rights everyone else takes for granted every day. It's a fight every day for us to have them.

"You're dealing with a quadruple stigma. You're dealing with being black, you're dealing with being transgender, you're dealing with being poor and uneducated, and then you're dealing with [HIV]."

We have to build an exterior to be able to withstand what we have to go through. And the trauma of not even being able to have counseling or anything to deal with the issues in our paths, like rape and molestation and abuse, and all the things that happen to transgender people when they're young. Because usually we're thrown out in the street. Usually you're put out, you know, at a young age.

I know that you founded an organization here in Atlanta, Ga., called LaGender to help the transgender community. Is it for the transgender community, or is it for transgender women who are living with HIV?

It's for both. Because we are advocates and we're a voice for the transgender community -- all issues that affect our lives. We also do education and workshops and trainings. We found out that the best way to get the doors open to the services that are available to trans people is to get the staff and the organizations and professional businesses educated on gender identity. And that has been the catalyst that we have used to open up the doors.

Not with everybody, but with most people, if they can get the questions answered that they need to have answered, [it helps to educate them.] Because basically a lot of people have got their education from Jerry Springer and Maury Povich. And so, when you have a real person there in front of you -- and I let them go under my dress and ask me any question that they ever wanted to ever ask a transgender person that keeps them from not understanding the experience and that this is not a choice. We did not choose this. You just don't choose that you are going to be another gender, and you're not. That's the way our brains are.

With any sex people you can see that they have genitalia that's male or female. That's a physical thing that you can see. But when it comes to the mind, people can't gather that that happened in our mind.

One of the things that you just mentioned a little earlier makes me think of if there's a high rate of trauma in the transgender community. Because you just said, "Many of us have been raped. We were molested. We were kicked out." So I know that you work with a lot of transgender people here in Atlanta. Are those the stories that you're hearing? Is that a common experience?

It's a common experience. And then, not to be accepted in the shelters when you do become homeless -- the homeless shelters will make you dress as your birth sex, instead of the gender you identify in, or else they will not let you in.

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That's re-traumatizing.

Uh-huh, re-traumatizing. And we never have had the counseling to deal with the trauma. So people are not considering what our experience is, what we have to deal with on a daily basis, like post-traumatic stress syndrome. And that's why we have a lot of issues, mental issues. Because we haven't had the tools, or the therapy, or the resources to get rid of that -- you know, heal through what has caused that, and then be able to deal with our gender identity.

People think that the gender identity has something to do with all of that. But even that -- being raped and abused -- doesn't make you transgender. You know, it doesn't.

Let me ask you about your health now. Where do you get your care? What meds are you on? How is your overall health at this point in your life?

My health has been the best it has ever been. I finally found a regimen and a doctor who is very knowledgeable about transgender medicine.

And who is that (just to give that person a plug)?

OK. Hermione Wilson. She's a physician's assistant, but she's a good one. She should be a doctor. Because the doctor I had, I had so many problems with him. He just wanted to deal with my HIV. He did not want to deal with my gender identity, period, because of his religious beliefs. He didn't say that. He didn't have to say it. I read between the lines. And, plus, his nurse, she was the same way, which she had told me.

That's a problem. Because people may not want to go back to care. It may affect their treatment for their HIV if they're not going in. It could prevent you from going when you have the flu, or a cold, or something like that. So that's great that you were able to kind of say, "Enough is enough."

The thing with transgender people: They're more concerned, even when they have HIV and AIDS, about their gender identity, than they are about their HIV and AIDS. They want us on the road that they are interested in. And if you address that issue, you'll get them to adhere to their drugs; you'll get them to comply more with whatever regimen they're on; and it's just an overall ... because it makes them feel whole and it makes them feel that they are still achieving toward their beauty. And then they want to invest in their health. They want to take their medicine. They want to go to their doctors' appointments.

But if you just want to brush over the person and just get to the disease, when that person got all these barriers, you're not [going to be able to do that.] You have to go beyond that. And fortunately, we have the Center of Excellence for Transgender Health in San Francisco, run by JoAnne Keatley. She's been my mentor for a long time. They have developed a website with all the protocols on there: for the doctors, how to distribute hormone therapy to transgender people; how mental health therapists are supposed to do all the protocols. So a doctor can't say, "I don't know anything about transgender." They can go to the website and pull it up, and then they can get it now.

"Every day is a fight -- a fight to use the bathroom, a fight to get a job, a fight to get people to respect you as you present yourself, a fight just to have normal human rights."

So, you brought up a question for me. Do you take hormone therapy?

Uh-huh.

And have you had any complications between your HIV meds and your hormone therapy?

No. No, it seems to work perfectly well, as long as I get my hormones.

OK. And Hermione distributes those to you, as well?

Mm-hmm.

And then you brought up another issue. Are you involved in any kind of mental health therapy?

No. Currently, I'm not involved in mental health therapy. But my organization, LaGender, we have been in collaboration with Positive Impact to service our community, knowing that they have limited budgets. So we're kind of at the bottom of the list when it comes to being trans-specific counseling that we need for this.

They can hit some of the issues, but really, still, it's a different kind of therapist that really needs to address a trans person.

Do you think it's important for the therapist to be transgender, or do you think that "as long as you're sensitive to our issues"?

Very knowledgeable and sensitive. They don't have to be transgender. Because a lot of good doctors are not transgender, but they understand what has happened in the body to cause this. And so that gives them a greater understanding of how it could be.

Other people are getting caught up with the way they were raised and the way they were taught. You know, that mindset that's been put into you, and how this society has dealt. But with a doctor, or some doctors that do this, they know that if this doesn't happen in the body, and it's happening in the mind, it's real to them. And the only way to correct it is to correct the body. Because you're not going to change that I feel and wake up in the morning and say, "Oh, Miss Ross. I feel like Miss Ross."

And I put on my clothes and my dress. And I always, everywhere I go; it's a whole feeling for me. It gives me a sense of a high self-esteem for myself. No matter who knows that I'm transgender. I don't care. I want them to know.

Let me talk to you about your activism. You've become quite the activist. And we have known each other a long time. I remember watching you kind of grow into this role as an activist. And now, you are quoted in the newspaper frequently when there are issues that affect the transgender community. Can you talk to me just a little bit about what made you become an activist?

Somebody had to do it. And somebody had to have the compassion and then have been there and lived through those issues, to be able to stand up and talk for the community that I represent. I don't represent all transgenders, you know. I try my best to, but specifically, I deal with transgenders that are really in dire, dire straits. You know, they are really on the fringes of committing suicide, and of great depression. And the young ones -- trying to prevent them from becoming HIV positive. And see the health disparities that they are talking about that are supposed to be addressed in this National HIV/AIDS Strategy.

The biggest thing as to why trans people have high infection rates is because the health disparities come into play when you are homeless and there's nowhere for you to go. You've got to go out on the street and sell your body. That's our only alternative, for a trans person. Because no one will hire you.

Talk to me about what's happening right now in Atlanta with the police department.

Oh, right now they want to banish the prostitutes. Specifically, they're targeting transgender prostitutes -- and in the area where I once worked, and was a prostitute, and was arrested. And I spoke before the city council Monday and I informed them of my history with the city, and that I had been locked up more times for not committing a crime than for the times I was committing one.

I would assume one of the things that is said is that, "If you don't want us to be on the street engaging in sex work, then hire us. So, do you have a position at the Atlanta police department? Because many of us could be your administrative assistant, or could be doing other things in a job. So, one way to help is to hire us."

I made that suggestion to the neighborhood association lady who had got this banishment together. I said, "With the resources and the business people down in midtown that pushed this banishment, to banish these people, through, couldn't you have turned that money and those resources around and created a resource center, and offered them a job, and job training? And did something besides banishment?"

So the city council decided to table it. And now they're going to take it back to a working group and see, can they come up with a better solution. I mean, if you can build a billion-dollar stadium (that we don't need) here in Atlanta, why can't you take care of our own?

That's a good point. I want to ask you about something else. Are you in a relationship?

Yes. I've been married for 22 years. And he's a good husband. And I have got three children: Spirit, Angel and Roosevelt. Those are my dogs. And then I got hundreds of adopted daughters and sons that I counsel on a daily basis.

Tell me how you met your husband.

I met him at the club. I was a showgirl and he was the DJ. And I needed my music.

And is he living with HIV, as well?

No. As a matter of fact -- and he just had his last test -- he is still negative.

That's great. So let me ask the next obvious question: How do you negotiate safer sex?

Well, we don't have to negotiate. What I say, goes.

I love it! So, let's talk about the future. What is your hope for the future for transgender people who are living with HIV, and the transgender community, in general?

I would hope that we would have a clinic here in Atlanta, a facility where we can go and get everything that we need in one place. And also to have a transitional housing program for the young transgenders that are being thrown out, homeless, on the street -- so that we can get them in school, you know, keep them in school, and get their name changes, and help them get on hormone therapy and everything, and that the hormones will actually, hopefully, through the Affordable Care Act, become available to transgender people that can't afford to get them.

Because it means a whole lot, with the hormones and transgender people. I mean, especially with the youth -- that's all they want to hear. If I ain't saying anything about no hormones, they do not want to hear too much. I have to start a conversation off about that, and about the silicone injections, and stuff like that, and get them started. Then they're pumped up and you have their attention.

And that's your sole focus, is getting into your desired gender role.

What would you say to a young transgender female who was just diagnosed with HIV? What would be a message that you would give her?

Go to the doctor. See about yourself. Love yourself. And start on a new path, with new boundaries that you set for yourself in your new life that you're starting to live. Don't look at it as a curse. Look at it as: It has opened your eyes that you should not live the way that you live in order to contract this disease, and that "I need to live a healthier lifestyle for myself, because I can today. Today, I have more opportunities that I can go about it and do it the right way, and come out and be a success story."

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